By STEVE BROWN - Staff Writer
Chico Enterprise-RecordDr. Luis Cebrian says he feels like he's trapped inside a shell. "I feel like I'm basically made out of wood or rubber."
Although he is paralyzed, he is acutely aware of his
body. His experience is different from a person who has had a severe
spinal injury and has no sensation from the neck down. "I can feel my
toes. I can tell you the places where I hurt. I feel tired when I've
been sitting in one place too long. I feel like I could just get up and
walk."
As he sits in an alcove off his living room
talking about what it's like to be unable to move, Luis' wife Valerie
is at his side. She periodically crosses and uncrosses his legs, puts a
glass of water to his lips so he can sip from it and makes small
adjustments in the direction his wheelchair is facing. Except for brief
respites, she's his full-time caregiver.
Luis can't move because he has amyotrophic
lateral sclerosis, a disease that attacks and kills the Motor neurons
in the brain and spinal cord. The disease eventually makes it
impossible for the brain to control muscles or signal them to move.
Living inside a shell can be confining. But
Luis says it's not all bad. "It's given me time to catch up on my
reading." He can move his head just enough to use a mouth wand to turn
the pages of his books. "I've been able to read Edward Gibbon's 'The
Decline and Fall of the Roman Empire.' I've read Marcel Proust's
'Remembrance of Things Past' in French. I have a friend who had read it
in English. We got together and discussed it. We called ourselves the
Proustian Society."
Luis was diagnosed with ALS in 1994. He hasn't been able to
walk since 1998, the year he had to give up his medical practice. He
hasn't been able to move his arms since 2000. He can still move one
finger, but not enough to work the remote on his TV set. He admits he
spends too much time watching TV. "The shows that come on in the
morning are boring and repetitive."
More rewarding is the time he spends at his computer. He uses
voice-activated software to navigate his way around the Web and do his
e-mail. Luis says being able to use his computer is a godsend. "I'm
glad we're living in the technological age." Over the last few years,
several of his letters to the editor have appeared in the
Enterprise-Record. He has weighed in on issues ranging from the war in
Iraq, to health insurance reform, to the ancestor gates mosaic at
Community Park. His opinions have sometimes inspired other readers to
respond with letters. "I've been attacked (in print) a couple of
times." He said he's pleased with the effect his letters have had.
Valerie has mixed feelings about that part of her husband's
life. "Whenever I go out and someone asks me if I'm related to Luis
Cebrian, I want to say 'maybe.'"
Luis may be obliged to lead a sedentary life, but he's not
housebound. They have a van that accommodates a wheelchair. They go out
to movies and restaurants. "I have to feed Luis," Valerie said. "If I
were in his position, I might not feel comfortable about being fed in
public, but Luis is game for just about everything. He's a very good
sport."
The Cebrians have been to Europe three times since he was
diagnosed with ALS. "Italian trains are great for disabled people to
ride in," Luis said.
"We drove around France in a disabled van," Valerie said.
"All of the London taxis take wheelchairs," Luis said.
One of their memories of touring Europe is the time Luis choked
while they were eating at a restaurant. People who have ALS have
difficulty swallowing. "That was a real show-stopper," he said. "This
would be a serious problem for many people, but because I'm a physician
I have taught my wife how to deal with that." Luis was a general
practice physician. His office was on The Esplanade. The Cebrians have
lived in Chico since 1983.
ALS is called a "progressive" disease, which means the symptoms
get worse over time. There is no cure and there are no treatments to
reverse the symptoms. "People with ALS have plateaus where nothing
changes, then suddenly they take a step down," Valerie said.
Luis can still speak, but he may lose that ability. ALS
eventually affects all of the voluntary muscles. In its later stages,
the disease can interfere with breathing.
In the middle of the 20th century, ALS was known as Lou
Gehrig's disease. It was named after the first baseman, shortstop and
outfielder for the New York Yankees. ALS forced Gehrig to retire from
his baseball career in 1939.
Today, the disease is more commonly associated with Stephen
Hawking, a theoretical physicist and professor of mathematics. Hawking
was diagnosed with ALS in 1963, when he was 21. He is confined to a
wheelchair and hasn't been able to speak since the late 1980s. Hawking
and Luis share a trait that is uncommon in people who have ALS: They
are among the 10 percent of those diagnosed with the disease who have
survived for more than 10 years. The typical survival time after
diagnosis is three to five years.
Luis said he has no idea why he has lived this long, but
expects to be around for many more years. "Don't we all believe we are
immortal?" he said. "When I was diagnosed, several doctors offered me
their sympathy. Today, many of them are dead or dying."
He said his biggest regret is his loss of independence. "I am
100 percent dependent on other people." He said he began living on his
own when he was 19. He is now 73. He and Valerie have been married
since 1979.
"We have quite a history behind us," she said. "We've shared a lot of fun things in our lives."
Chico's first fundraiser walk for ALS will be held Saturday in
Bidwell Park. Registration will start at 10 a.m. in the barbecue area
at One-Mile Recreation Area. The walk begins at 11. The event,
sponsored by the Greater Sacramento chapter of the ALS Association, is
called Walk to D'Feet ALS. The one-mile route is wheelchair accessible.
Luis and Valerie and Shelley Hansen, who also has ALS, and Luis' wife
Alicia will take part in the walk and opening ceremonies. Jenna
Teyshak, who is the niece of a person with ALS, will perform with her
band at the ceremonies.
Proceeds will go to the chapter, which provides services to
patients, caregivers and families affected by ALS. The chapter serves
24 counties in Northern and Central California. Funds from this event
will also support research directed to finding a cure for ALS.
For information, call 1-916-979-9265 or go to the organization's Web site at www.alssac.org.
Staff writer Steve Brown can be reached at 896-7755 or sbrown@chicoer.com.